Itching and feeling cold

[Shezza123]

Hi I’m feeling so fed up again with this pbc and itching , I’m itching from head to toe and feel so much like in a cold sweat . I am covered in raised spots on arms like hives from itching , I cover myself in body butter keep moisturised and now take prescribed antihistamine but nothing helping , I’m covered in bruises on legs and stomach and red stretch like marks from scratching so much .. really fed up

[Chumito]

Well I thought I wrote this myself. I feel 100% exactly the same at this exact moment, it’s not funny. Tons of little bruises on my legs. Every exact same síntoma. I’m so sorry you’re feeling like this. Nothing calms this “uncomfortableness”. My hepatic specialist coincidentally called me today after reviewing my biopsy with his team, he is going to run some therapeutic tests, and took me off Urso. We’ll see. Stay strong.

[Shezza123 in reply to Chumito]

It’s nice to hear from someone that knows exactly what I mean , wish you all the best .

Sherrie xx

[butterflyEi]

I started itching about 5 years ago. The first line treatment, after useless antihistamine treatment, was colestyramine. I took the prescribed dose for a while but it did not do much for the itching so Rifampicin was added and then Sertraline at a low dose. For the most part my itching came under control.

If you listen to Prof. Jones and Prof. Neuburger I believe both of them have indicated that anti histamines rarely work in cases of the so called itch of PBC.

If you are in the UK I think the GP has it within his/her remit to prescribe colestyramine but for other meds such as Naltrexone or Rifampicin you will need help from the hepatologist.

In the meantime drink lots of water and keep your skin moisturized. In my experience the raised spots are caused by finger/fingernail damage. Keep cool, even though you feel like you are in a cold sweat.

If you are already under the care of a specialist telephone the secretary and try to get a message to the specialist, under the current COVID situation he/she may be able to help you via a telephone consultation.

For myself I am away from my home base, unable to have direct access to my specialist - I have been unable to source colestyramine and my itch increased to levels that brought me very low, in conversation I was reminded that I had been prescribed Gabapentin for another disorder and that my itch had improved, I have been able to buy that here and again the level of my itch is tolerable. Gabapentin/Neuontin is a drug that GPs have on their list of prescribable drugs.

Hope you find some help soon.

[Skypony]

So sorry to hear about that, sending best wishes and the hope that you find something that works for you soon.